Regine's Book (11 page)

Spring, 2009

Thursday, April 2, 2009

M
y blood count has been dropping lately, and today it fell even further. My immune system also seems like it's getting weaker, so we decided to call the doctors at Riksen. They told us that I should get a bone marrow test so I won't have to just sit and wonder if something is really wrong. So that's what we did, and it went really well. The doctor at the hospital in Kristiansund is great. It was painful (of course), but it went really well compared to the other bone marrow tests I've had. Was given a lot of anesthesia, so I felt pretty woozy afterward. The test will be sent to Riksen so they can look at the results and see if there's a reason the blood count keeps dropping.

This doesn't necessarily mean anything's wrong. It could mean that a virus is developing, or maybe that I just need to stop taking some of my medications. So yeah, it's not necessarily a sign of a relapse. My blood has been tested for cancer cells, and they didn't find any (which is a really good sign), and I don't feel very sick right now either. Hope for the best!

All that being said, I was definitely scared when they told me I needed another bone marrow test—and it doesn't help when your family gets so anxious, too. We're going to try not to make anything more dramatic than it needs to be. The doctor at Riksen said a lot of patients come in with decreasing blood counts and have to take bone marrow tests. So it's not exactly unusual. Anyway, I'm optimistic.

Saturday, April 4, 2009

T
oday I woke up to terrible news: I've had a relapse. The bone marrow test didn't look very good, and showed some immature cells. It hasn't gone very far, so the doctors suggested I stop taking one of the drugs that weakens my immune system. The general objective right now is to create some GVHD antibodies. That way, my immune system might be able to expel the sick cells on its own. Unfortunately, as it stands, I don't have a very good chance—even if steps like this do give us some small hope.

So now we just have to wait two weeks to see if anything happens. It's risky to stop taking this medication, and it could have deadly results. If this doesn't work, there's also been some talk of injecting cells from donors to stimulate GVHD production. I could get really sick from that kind of a procedure, but right now we can only wait and see.

If nothing works, I don't have much longer to live. Another transplant is out of the question because it wouldn't do very much and my body probably couldn't handle it anyway. Who would have thought this would happen?

I'm devastated, and so is my whole family. Life is so incredibly unfair—and now I just have to sit at home and wait to die? I don't have words to express how cruel this seems…How are we supposed to get through this?

I'm also crushed by the thought that, after I'm gone, my family will be left to deal with the fallout on their own. It's heartbreaking to think that they have to stay behind without me, with just their sorrow. Because really, how is anyone supposed to handle losing a family member?

Monday, April 6, 2009

N
o one in the family is taking this very well. Friends and even acquaintances—people I've just met once or twice—are sending me consoling messages. And I'm so thankful for everyone's consideration, whether I know them well or not. As far as I'm concerned, if you take the time to show that you care, that's enough. I'm overwhelmed when I think about how many people out there are thinking about me and wishing me well. It means so much.

I can't stop thinking about my family—especially my sister. I'm so worried about them. I don't want to be the cause of their unhappiness. Maybe it would have been better if I hadn't been born in the first place, so that they wouldn't have to suffer through this crippling sadness now. It's unbearable. I'm probably the one who's handling it best. I just try to make myself as indifferent as I can possibly be; I think that's the only realistic way of dealing with this.

You probably think I'm being really negative today, and you're probably right. We talked to the doctors at Riksen earlier, and they haven't given up on me yet. The relapse is still at an early stage, so I've stopped taking the immunosuppressing medication, and in about two weeks we'll find out if that's having any effect. The doctors will do everything they can for me. They also took this news pretty hard. They have a tough job, but they're also obviously doing something that's hugely important. They're going to have a meeting about me next Tuesday, I think, to talk about what they can try next, and what they need to be prepared for.

The reason for cutting the immunosuppressing drugs is so I can get a rejection reaction (GVHD). That's my only hope now. GVHD will allow my immune system to attack not just my body, but also the sick cells. I'll probably get some reactions within two weeks, but nothing's for sure. There's no guarantee it will work. No one knows.

My other option, if this doesn't work, is to inject/infuse lymphocytes from donors. For people not familiar with this practice, lymphocytes are donors’ cells that can help me to create GVHD on my own. I've heard of people with similar diagnoses to mine who've had relapses after three months and who have survived through this method. The doctors won't say whether or not they think it will work. They just don't know. They only know that there's a chance. No one can predict the future, so there's no use just speculating. The doctor we spoke with also mentioned a third possibility, but she didn't say what it involves. So I guess we'll hear more about it later, if it becomes necessary.

You're probably still wondering why they don't just give me another transplant. The doctors talk a lot about how risky it would be, and I know that it's a complicated process, and that a new transplant might just not work. But personally, I feel like I've got nothing left to lose. I've heard of people overseas who've had two transplants and still survived. They're still alive today. It sounds like a transplant might still be the fallback if nothing else works. They've never done two transplants on one patient here in this country, even though it sounds like it was considered in a few cases. Anyway, as long as they try everything they can, I'll be satisfied. Whatever the result, that's what really matters.

It's risky to cut out the immunosuppressive drugs. I could suffer from a serious immunologic attack that could kill me. But at the same time, these attacks are still important for me to get. The doctors would prefer not to treat me for them, too.

I honestly thought that my case was hopeless. The other people that I've talked to in my situation have been sent home to die. And thankfully I haven't gotten that advice yet!

Keep wishing me good luck!

And many did just that. In total, 353 readers commented on Regine's last two entries, among them conservative party politician Bengt Eidem, who is afflicted with leukemia and who wrote the book
Deadly Serious:

Hi, Regine!

I just discovered your blog today. I was on Svein Kåre and Anne Marie's website and read about a girl named Regine who'd recently had a relapse. I went right to your site and for the past hour I've been getting caught up on your story. I'm so impressed by your courage. And I love the way you write. Your posts are sad, wise, funny, and always tremendously engaging. I think that despite your struggles, you manage to put smiles to a lot of people's faces. It's a true pleasure to read your blog.

At the same time, it certainly wasn't a pleasure to read about the latest developments. But, for now at least, it's encouraging to know that the substances the doctors are using and developing will enable people to survive these really dangerous situations. (I just wish they'd start using these substances sooner—like right now, with you!) Regine, I don't often write about my gut feelings, but I think you're going to survive. I refuse to believe that your time has come.

In many ways, you and I are kind of in the same boat right now. It looks bad, but there's still hope for us. When you write about your indifference, I recognize myself, but when you optimistically describe your treatment options, I recognize myself there as well. So you and I have a lot in common, and for now at least, we also have LIFE in common.

Let's hold on tightly to that. And let's beat back the immature cells that are trying to overtake our bodies!

—
Big hug from Bengt Eidem, Trondheim

P.S.! Go moose! :)

Oh, Regine, sweetie, I felt twisted into knots after reading this! Your birth was one of the best things that ever happened to your parents, so don't ever think that they'd be better off without you. Think of all the happiness you have given those around you! Don't lose hope! ☺

—
Jenny Cecilie

Dear Regine!

Ever since you were born, you've made every second of every day wonderful for your parents and your family. Regardless of what you may think right now, the memories that you share with everybody around you are worth their weight in GOLD, and those memories are something that they will never want to be without.

Much luck in the days ahead—it's so great to see all of the support you have; in the meantime, I'll be thinking about you and yours. Kisses to you!

Keep plugging on like you've done all along! YOU are a wonderful person and your blog provides a huge service to tons of other people. You're a true role model. ☺

—
A big hug from Johanne

Dear, dear Regine!

I frankly don't know what I should write to you now. I felt faint when I read your entry, and am getting unbelievably frustrated. Jesus, this is so damn unfair!!

We're thinking of you, Regine!

The doctors at Riksen will have to put their heads together and come up with something very clever. They've managed to work miracles for others before, and they can do it again! If you aren't ready to believe in miracles yet, I'll believe for you. I can't wait to hear about your improvement.

—
Many hugs from Maren-Sofie

I had a brother who got cancer when he was ten or eleven years old. He died when he was sixteen. We couldn't do anything about it because when he had his third relapse, the cancer had spread through his whole body. Everyone knew he was going to die—he had anywhere from two weeks to a month left. But we made his last days his best. I miss him terribly, because he was the only one I felt I could trust. But I still carry many great memories with me, and they comfort me when I'm sad, since I know he'll always be with me in one way or another. I just want you to know that I know what it's like to lose a beloved family member. And you must not blame yourself in any way. But with all this support and compassion, you're definitely going to make it anyway! There's so much love and support out here for you, and trust me: That means something. That means a lot.

—
Anonymous

Thanks for all the great comments everyone; it means so much to me! For people wondering if you can write about me, go ahead—that would be just fine. ☺

Bengt Eidem: I also heard about your relapse via Svein Kåre and Anne Marie's blog. I was really upset when I read about it, because you're one of my heroes, and I was really hoping it wouldn't happen to you—or to anyone else, for that matter. I read your book when I was waiting for the transplant at Riksen, and it was really, really inspiring. I understood that it was possible I wouldn't survive, but after reading your book, I felt like I was much better prepared for everything I had coming. Your book gave me courage.

I think you're right when you say that we have a lot in common. I hope that we both get better. We have to believe it's going to happen, even if it's difficult at times. (Especially with the mood swings: One day we want to give up and don't care anymore, and the next day we want to fight on forever, and have complete faith that the next
procedure will be the one that works.) If you're reading this now, it would be so great to know how you're doing, because I'm very concerned. I've been wondering ever since I heard the terrible news.

—
Regine

Hi again, Regine!

I'm doing well. I'm at home and I'm almost pain-free—so two of the most basic criteria for happiness have already been met. ☺ Got a high dose of chemo as a start to my treatment in February. In March and April I went for two and a half weeks of daily radiation treatments. Last radiation is tomorrow and then I'm on Easter break. Gonna be celebrating a city Easter in Trondheim, so I'm hoping for good weather.

Then it'll be exciting after Easter, there'll be a lot of tests and consultations between St. Olav's and Riksen, and after that we'll have a better sense of what lies ahead, and what we still have to do.